Ce rapport avait pour objectif de guider l'action et le questionnement professionnels pour permettre le respect maximal des volontés liées à la fin de vie et un accompagnement le plus humain possible de la personne et des proches. Voici les résultats obtenus par le groupe de travail :
- Anticiper les situations de fin de vie en favorisant les échanges et en s’appuyant au maximum sur les ressources disponibles que ce soit au sein des équipes ou avec les partenaires du territoire.
- Informer et communiquer régulièrement sur les actions mises en œuvre, les adaptations qui s’imposent en période d’épidémie et les évolutions possibles des situations de fin de vie dont le décès.
- Garantir le confort de la personne et respecter les souhaits de chacun tout en prenant des décisions partagées lorsque des arbitrages s’imposent.
- Maintenir le lien avec les proches et l’entourage et leur apporter un soutien lors de la survenue du décès.
- Soutenir l’ensemble des professionnels dont la charge émotionnelle s’est accentuée.
- Préparer le deuil en offrant la possibilité aux personnes accompagnées et aux professionnels de partager un geste un moment, en mémoire de la personne.
Bien que prévu par la loi et quels qu’en soient les motifs, le refus de soins émanant du patient déstabilise les soignants. Pour ces derniers, il est important de comprendre les attitudes vis-à-vis de ce refus, les liens avec les pratiques professionnelles afin de proposer des repères pour une démarche clinique.
Purpose: St. Gabriel’s Hospital (SGH) in Namitete, Malawi, has a Home-Based Palliative Care program of 60 community health workers (CHWs) to support rehabilitation work. Over 5 years, these CHWs received support through annual rehabilitation training programs. The study explores the nature of the CHWs’ roles and factors affecting the program’s sustainability.
Subjects: Participants were home-based palliative care CHWs at SGH (n = 60).
Methods: This is a mixed-methods study including qualitative and quantitative data and analysis methods. Data were collected from training surveys, focus group discussion material, field and home-visit observation checklists.
Results: Results showed that 59% of the CHWs traveled = 5 km to visit patients. 100% of the 57 patients had participation restrictions. Following trainings, 93.3% of the CHWs felt more prepared. Qualitative analysis revealed four themes: (1) Empowerment and Motivation; (2) Barriers to care; (3) Communication and Network; (4) Scope of practice and Self-Perception of impact.
Conclusion: This study illuminated important aspects of the CHWs’ work: empowerment through training, burden of travel, and altruism. Future studies could include impact of CHW-to-caregiver training, patient outcome measures following care, and future training needs.
Significance: This study provides a unique perspective of the successes, barriers, and motivations of home-based CHWs in Malawi.
Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams.
Methods: CF care team members (“clinicians”), adults with CF (“patients”), and family caregivers (“caregivers”) rated the ability of CF clinicians to provide aspects of PC using a five-point scale (“poor” to “excellent”). Median ratings were compared between groups.
Results: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as “very good” at basic pain assessment and “good” at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training.
Conclusions: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians’ more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.
The availability of willing providers of medical assistance in dying (MAiD) in Canada has been an issue since a Canadian Supreme Court decision and the subsequent passing of federal legislation, Bill C14, decriminalised MAiD in 2016. Following this legislation, Hamilton Health Sciences (HHS) in Ontario, Canada, created a team to support access to MAiD for patients. This research used a qualitative, mixed methods approach to data collection, obtaining the narratives of providers and supporters of MAiD practice at HHS. This study occurred at the outset of MAiD practice in 2016, and 1 year later, once MAiD practice was established. Our study reveals that professional identity and values, personal identity and values, experience with death and dying, and organisation context are the most significant contributors to conscientious participation for MAiD providers and supporters. The stories of study participants were used to create a model that provides a framework for values clarification around MAiD practice, and can be used to explore beliefs and reasoning around participation in MAiD across the moral spectrum. This research addresses a significant gap in the literature by advancing our understanding of factors that influence participation in taboo clinical practices. It may be applied practically to help promote reflective practice regarding complex and controversial areas of medicine, to improve interprofessional engagement in MAiD practice and promote the conditions necessary to support moral diversity in our institutions.
BACKGROUND: Many domiciliary care workers have reported low confidence and isolation when delivering end of life care in patients' homes. Project Extension for Community Healthcare Outcomes (ECHO) is an initiative that has demonstrated success in increasing confidence and knowledge of end of life care in UK nursing home and community hospice workers, but it has not been evaluated with domiciliary care workers.
AIM: To test the acceptability of Project ECHO to domiciliary care workers as a means of increasing their knowledge of, and confidence in, delivering palliative care, and its effectiveness in reducing their isolation by developing a community of practice.
METHOD: A service evaluation, involving one domiciliary care agency delivering care in the community, was conducted from May 2018 to April 2019. The participants were 25 home care workers who were employed by the agency. Participants were invited to attend an event at which gaps in their knowledge were identified, and a curriculum of learning on the Project ECHO programme was developed. The learning involved 12 educational sessions over 12 months, with each session teaching a different component of palliative care. Questionnaires were completed by the participants before and after the educational sessions to assess their effect. In addition, a focus group was conducted with four of the participants.
RESULTS: Comparison of the questionnaires completed before and after participating in the education sessions revealed an increase in self-reported knowledge across all 12 topics of the curriculum and an increase in confidence in seven of the 12 topics. However, attendance across the 12 sessions was variable, with no more than nine being attended by any one participant.
CONCLUSION: Palliative care education for domiciliary care staff using ECHO methodology was well received, relevant and accessible, and may have the potential to improve self-assessed knowledge and confidence. However, finding an ideal time for as many staff to attend as possible may be challenging.
Background: Voluntary work plays a significant role in hospice care, but international research has mainly been conducted on the mental health and fear of death of paid hospice staff. The aim of the present study was to compare the Hungarian hospice volunteers with paid employees with regard to attitudes and fear of death, as well as mental health in order to see their role in hospice work and their psychological well-being more clearly.
Methods: The target population of the cross-sectional questionnaire study was hospice care providers in Hungary (N = 1255). The response rate was 15.5% (N = 195); 91.8% (N = 179) of them were women. The mean age of female hospice workers was 45.8 years (SD = 10.46 years, range: 23–73 years). One-quarter (27.9%, N = 50) of the female respondents were volunteers. The instruments were: the Multidimensional Fear of Death Scale, the Perceived Stress Scale, the WHO-5 Well-Being Index, and a shortened versions of the Beck Depression Inventory and the Maastricht Vital Exhaustion Questionnaire.
Results: Volunteers scored significantly lower on 5 dimensions of fear of death than paid employees, and showed significantly lower levels of vital exhaustion and significantly higher levels of psychological well-being than paid employees. Fear of the dying process was associated with an increased perceived stress, depressive symptoms, and vital exhaustion in both groups. Psychological well-being showed a significant negative, moderate correlation with four aspects of fear of death among paid staff; this pattern did not appear in the volunteer group. In addition, the association between fear of premature death and perceived stress, vital exhaustion, and depressive symptoms was more pronounced is case of paid workers.
Conclusion: Higher levels of psychological well-being and lower levels of fear of death among hospice volunteers suggest that they are less exhausted than paid employees. Increasing the recruitment of volunteers in hospices may help reduce the overload and exhaustion of paid employees.
Background: Telemedicine has been proposed as a means to improve access to palliative care. There is limited information about how health care workers feel about providing this kind of care and how families feel about receiving it.
Objective: this study assesses provider and caregiver perceptions of the safety and efficacy of the Distance Support Program (DSP) of a home-based palliative care provider in Beirut, Lebanon.
Design: interviews were conducted with 8 physicians and nurses who provided that care through the DSP as well as 49 caregivers of patients who received care between January 2015 and December 2017. Interviews were analyzed thematically.
Results: Although they would have preferred having access to home visits, caregivers reported that they valued the information, guidance, and emotional support they received through the DSP and they appreciated having telephone access to providers. Health providers reported the DSP was more efficient than home visits. They felt it was safest when delivered by an experienced provider, they had access to a reliable caregiver, and the patient was assessed at least once. They felt it was important to communicate clear expectations to patients and caregivers when delivering care by telephone.
Conclusions: Telemedicine can be a useful tool to provide palliative care services in settings where they would otherwise not be available.
BACKGROUND: Palliative care knowledge is essential in primary healthcare due to the increasing number of patients who require attention in the final stage of their life. Health professionals (physicians and nurses) need to acquire specific knowledge and abilities to provide high-quality palliative care. The development of education programmes in palliative care is necessary. The Palliative Care Knowledge Test (PCKT) is a questionnaire that evaluates the basic knowledge about palliative care, but it has not been adapted into Spanish, and its effectiveness and utility for Spanish culture have not been analysed.
OBJECTIVE: The aim of this study was to report the translation into Spanish and a psychometric analysis of the PCKT.
METHODS: The questionnaire survey was validated with a group of 561 physicians and nurses. The PCKT Spanish Version (PCKT-SV) was obtained from a process, including translation, back translation and revision by experts and a pilot study. The content validity and reliability of the questionnaire were analysed.
RESULTS: The results showed internal consistency and reliability indexes similar to those obtained by the original version of PCKT.
CONCLUSION: The PCKT-SV is a useful instrument for measuring Spanish-speaking physician and nurse knowledge of palliative care, and it is suitable to evaluate the effectiveness of training activities in palliative care.
Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence, and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organisational and systemic approach which includes access to informal and professional support.
Background: A better understanding of differences between the preferences of the general public and the recommendations of healthcare providers with regard to end-of-life (EOL) care may facilitate EOL discussion.
Methods: The aim of this study was to clarify differences between preferences of the general public and recommendations of healthcare providers with regard to treatment, EOL care, and life-sustaining treatment (LST) based on a hypothetical scenario involving a patient with advanced cancer. This study comprised exploratory post-hoc analyses of “The Survey of Public Attitude Towards Medical Care at the End of life”, which was a population based, cross-sectional anonymous survey in Japan to investigate public attitudes toward medical care at the end of life. Persons living in Japan over 20 years old were randomly selected nationwide. Physicians, nurses, and care staff were recruited at randomly selected facilities throughout Japan. The general public data from the original study was combined to the data of healthcare providers in order to conduct exploratory post-hoc analyses. The preferences of the general public and recommendations of healthcare providers with regard to EOL care and LST was assessed based on the hypothetical scenario of an advanced cancer patient.
Results: All returned questionnaires were analyzed: 973 from the general public, 1039 from physicians, 1854 from nurses, and 752 from care staff (response rates of 16.2, 23.1, 30.9, and 37.6%, respectively). The proportion of the general public who wanted “chemotherapy or radiation”, “ventilation”, and “cardiopulmonary resuscitation” was significantly higher than the frequency of these options being recommended by physicians, nurses, and care staff, but the general public preference for “cardiopulmonary resuscitation” was significantly lower than the frequency of its recommendation by care staff.
Conclusion: Regarding a hypothetical scenario for advanced cancer, the general public preferred more aggressive treatment and more frequent LST than that recommended by healthcare providers.
Objectives: Palliative care workers have continuous exposure to the emotionally draining effects of pain, suffering, death, grief, and mourning. Burnout syndrome is common among these individuals who accompany patients on the way to death. This study evaluated burnout, stress, anxiety, and depression among care givers.
Methods: A total of 47 individuals working in palliative care units or internal disease and neurology clinics participated in the study. The participants were divided into 2 groups: palliative care workers (Group P) and workers in internal disease and neurology clinics (Group A). All of the participants completed the Maslach Burnout Inventory, the Beck anxiety and depression scales, and the Stress Appraisal Measure.
Results: A total of 47 healthcare workers agreed to complete the scales. Emotional burnout and desensitization scores were found to be elevated, and personal success scores were low in both groups. The Beck Anxiety Inventory revealed findings of moderate anxiety in both groups, while cognitive-sensorial, physiological, and pain complaints, as well as signs of stress, were more pronounced in Group A.
Conclusion: Burnout is a significant problem among healthcare workers and signs of stress and cognitive-sensorial, physiological, and pain complaints are particularly common among those working in palliative care units. Structural arrangements aimed at addressing the causes of burnout could positively affect the well-being of healthcare workers.
Health care professionals’ (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs’ initial awareness of a child’s impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a “delicate dance of figuring out” key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.
Background: Despite the body of literature regarding the varying definition of compassion, there appears a lack of literature pertaining to the meaning of compassion from the perspective of health care professionals working in palliative care settings.
Objective: The study aimed to explore how health care professionals working in palliative care settings view and/or understand the construct of compassion.
Methods: A qualitative approach using semistructured interviews was used. Interviews were conducted with eighteen health care professionals working in pediatric, adult, and aged palliative care settings. Interviews transcripts were thematically analyzed.
Results: Thematic analysis identified four main interrelated themes and supplementary subthemes. Health care professionals working in palliative care settings identified their perception of the (1) meaning of compassion, (2) importance of providing compassionate care, (3) barriers to providing compassionate care, and (4) facilitating compassionate care.
Conclusions: This study presents a novel understanding of the components of compassion from the perspective of health care professionals working in palliative care. While there is need for future research, important areas of improvement include increased resourcing, reducing time pressures, and education within palliative care settings. This will enable the fostering of compassionate care to patients, as well as enhanced well-being both professionally and personally for health care providers delivering such care.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
By 2060, almost 25% (98 million) of the population is expected to be aged 65 or older. Health care professionals who provide hospice and palliative care are overtasked and demonstrate symptoms of burnout. Narrative medicine and mindfulness interventions create meaningful connections with patients, improve the delivery of patient-centered care, and enhance the health of the caregivers. In this pilot program, health care professionals in hospice and palliative care settings were invited to participate in a study to evaluate the impact of narrative medicine or mindfulness on measures of burnout and empathy. Participants completed baseline and 12-week post-intervention surveys of burnout and empathy, as well as weekly journals of their experience. Mean overall scores for depersonalization were significantly reduced at 12-week post-intervention. There were no significant changes in emotional exhaustion or empathy compared to baseline. This brief, weekly intervention may be beneficial for both patients and health care professionals in the hospice and palliative care setting.
CONTEXT: Symptom management is essential in the end of life care of long-term care facility residents.
OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.
METHODS: A post mortem survey in Belgium, the Netherlands and Finland: staff and family carers completed the "End-Of-Life in Dementia - Comfort Assessment in Dying" scale (EOLD-CAD), rating 14 symptoms on a 1 to 3-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale and total scores at a group level and interrater agreement and percentage of perfect agreement at a resident level.
RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia—Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.
CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.
PURPOSE: To explore the attitude of nursing professionals towards death.
DESIGN: Systematic qualitative review methods were used.
METHODS: A search was conducted in the PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and CUIDEN databases. This study included 17 articles.
FINDINGS: Thirteen categories emerged, which were grouped into three themes: meanings and feelings during the dying process; coping strategies in the face of death; and the importance of training, experience, and providing a dignified death. In the different accounts of the participants, it was found that death had a large negative emotional impact on them, that the participants complained about the lack of previous training in the care of dying patients, and that avoiding these complex situations was one of the strategies most commonly used by professionals to face the death of a patient.
CONCLUSIONS: The lack of training in the basic care of terminally ill patients, as well as today's preconceived negative idea about death, both cause health professionals to experience situations of great stress and frustration resulting, on many occasions, in resorting to avoidance of these situations, thus preventing dying with dignity.
CLINICAL RELEVANCE: In this article, we explore the consequences of this process for nursing professionals, common coping strategies, and possible areas for improvement, such as the need for the training of nursing professionals in the care of terminally ill patients and their families.
Background: In the United States, 45% of people enrolled in hospice have dementia. We know little about how hospice professionals facilitate preference-aligned end-of-life care for people with dementia (PWD) and their families.
Objective: To examine hospice stakeholders' perspectives on caring for PWD and their families.
Design: Multisite qualitative study using semi-structured interviews with interdisciplinary hospice clinicians, leaders, and administrators. The interdisciplinary team used the constant comparative method to identify, code, and characterize relevant themes.
Setting/participants: Four geographically distinct nonprofit U.S. hospice organizations. Fifty-one hospice employees: 61% clinical staff, 25% executive leaders, and 14% administrators.
Measurements: Interview domains included participants' practices of engaging patients/families in discussions of preferences for end-of-life care and professional opinions of changes over time. Cross-topic probes focused on delivering hospice care to PWD and their proxies/families.
Results: Four themes regarding caring for PWD in hospice. (1) Dementia prevalence in hospice is increasing and some hospices are developing programs to accommodate specific needs. (2) Setting impacts discussions of preferences and care decisions. (3) Caring for PWD on hospice poses unique challenges caused by (i) perceptions that dementia is not terminal, (ii) a lack of advance care planning discussions before hospice admission, and (iii) proxy decision-makers who were inadequately prepared for their role. (4) Hospice regulatory and policy changes disproportionately impact PWD.
Conclusions: Hospice professionals perceive increasing demand for, and multilevel challenges to, caring for PWD. Clinicians "upstream" from hospice may help by engaging patients and proxies in discussions of preferences for end-of-life care and providing anticipatory guidance.
Palliative care practice is associated with risk factors linked to end-of-life, chronicity, personal, interpersonal, and work characteristics, as well as with protective factors, but how these are perceived by the health care providers themselves is not clear. This article aims to elaborate a theoretical framework explaining the risk and protective factors for palliative care providers in their daily practice. Nineteen providers (16 nurses, 3 physicians) working in a palliative care unit of a clinical-research institute in Northern Italy were interviewed. A Grounded Theory qualitative approach guided the data collection and analysis. From the interviews, 28 codes, subsequently organized into 11 interconnected categories, emerged. They described both stressors (emotion management regarding death/dying, conflicts, communication and relationship with patients/caregivers, discrepancies between patients' and caregivers' needs, communication of poor diagnosis/prognosis, decision making about treatment, and real-life and work interference) and protective factors (social support, positive approach and value of past experience, recognized value of/passion toward professional work, work-family balance). Experiencing these elements as positive or negative depends on the professionals' point of view, as well as their past and present experience.
Understanding what dealing with life-limiting illnesses means may suggest tailored interventions to improve professionals' well-being by fostering the protective elements and combatting the risk factors.